Indiana Pouch users chime in

• By roadrunner
• Posted October 22, 2009 at 1:05 am
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Welcome to inspire,

I see you want info on the indiana pouch, Tamlin would be our source, I am sure she will check in and give you the details, she just had hers done recently at the Cleveland Clinic.
You'll hear soon....
Ginger

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• By lsh
• Posted October 22, 2009 at 6:44 am
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Karego also has an Indiana Pouch. I'm sure she will answer you. As far as I know, she is very happy with it...and very happy to be CANCER FREE.

Lynda

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• By Karego
• Posted October 22, 2009 at 9:42 am
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Neoman, I'm a pouch person (Jan '04). As everyone will tell you, we are mostly happy with whatever diversion we have. We are very adaptable people. I've copied your questions and will answer below.

Can I swim?--yes (I place a clear, Sure Site cover over my stoma when I swim. They are waterproof and available at medical supplies. I always make sure no bacteria can enter the stoma.)

Since you void with a cath, do you do the same cleaning and stuff as those with neo-bladders? -- not sure what the neo people do to clean. I lube the catheter with KY jelly each time. The stoma is tender and needs the lubrication to make the catheter slide in easily. There is no pain or feeling to speak of during insertion. The intestinal tissue doesn't have tactical sensation. So, catherizing is simple and easy.
Good hygiene practices apply to all of us for any diversion.

How often do you void? 4 hours, longer-shorter? -- Time to void depends on the amount of fluids you take in. Early on, the recommendations are 2 hour intervals. After complete healing and recovery, most of us void around 3.5 to 4 hour intervals. Once the healing and sizing of the bladder is accomplished, you will learn how to make sure you are empty. It is necessary to move the catheter around and it helps to press on the tummy to assist the fluid to move to other areas so the catheter can 'find' it.

Risk of infection? Have you had one? -- There is risk of infection with all diversions. Most of us, regardless of diversion, have them from time to time. I have had probably 3 in the 5 years since my surgery. Symptoms are the same for all of us. Since we don't experience the urgency or pain we would have with an original bladder, we must watch for cloudy urine, stronger smell, chills and fever.

How satisfied are you with it? -- Definitely satisfied.

How do you sleep? Normally? Get up at night? why? Can you sleep on your side? -- I void around 11:30 and again around 6:30. This all depends on the fluid intake late in the evening. I sleep mostly on my side. Early on, after surgery and while training/getting the bladder into its routine, I did get up after 4 hours. When you get fully trained, you will know when the 'full, tight' feeling signals you to empty.

When you sleep @ night, does it leak? Does it ever leak? -- Some of us have leaking problems. Early on, I had some leakage, but now I will leak only if my pouch is full. I wear a small pad over the stoma on my tummy for insurance (Always Infinity, cut in half) The adhesive backing adhers to my underpants. Simple solution that provides security.
Surgeons have different methods of devising the stoma and the check valve from the small intestine where it joins the large intestine. (Ask your surgeon how he normally does the stoma and how he insures the valve is adequate to protect against leakage).

How much does your system hold? --- I don't measure anymore, but I think most voids are around 250-300 cc's of urine. It is best to keep the volume lower to avoid distending the bladder. Since there are no muscles to spasm and help to empty, an overstretched neobladder will become difficult to empty simply because pockets of urine will be hard to reach with the catheter. Incomplete emptying, will increase the chance of infection and the possibility of bladder stones developing.

What daily maintaince do you need to do if any? -- I now use one time only catheters. (First 4 years, I reused them by washing with soap and air drying. Medicare is paying for 120 a month now). I irrigate the pouch daily with 200 cc of .09% saline solution.

What am I missing? -- My answers may bring up more questions for you.

After the operation, did you use the system right away or was there some other way of voiding until it was healed? -- You will have a temporary supra tube to drain while your new stoma is healing. (If you are using your neobladder with just the adaptabion of a stoma, then your healing time and adjustment may be faster than those of us who receive the pouch newly made.)

Does the pouch allow you to be more or less normal? -- I think we are all more or less normal with all the diversions. As for body image, there is no change visible unless you are nude. My stoma opening is just lower and to the right of my navel and about the size of a pencil eraser. Sets flush with the body. Some people have their stoma opening in the navel. I would caution anyone to be aware of possible hernias. Abdominal muscles are often inadequate to maintain the stress placed on them by the surgical changes. I would discuss this with my surgeon also. For overweight people, it might be good to put in place a mesh to strengthen the area when the surgery is done. It might help to prevent hernias from developing.

Hope this helps you in determing what you want to choose if you need to change your neo.
Karego

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• By Tamlin
• Posted October 22, 2009 at 9:43 am
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Neoman,
Here is a book you can read online about a gentleman who had a neobladder that was turned into a "continent cutanrous pouch" . His wife wrote it and graciously shares it online. She has been such a help to me.

http://blcwebcafe.org/media/acrobat/bladder_cancer_urostomy_and_impotence.p df

I have Bible Study here this morning but after it is over I will come back and answer all your questions in another post.

Take care,
Tamlin

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• By phallon
• Posted October 22, 2009 at 2:12 pm
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Hello,

I just read Kargo's answers & everything she said has been the same for myself. I am reusing my cath's but steralize them before using. I have my stoma in my navel, so if someone were to see me they would never know I had anthing but a God made bladder. I learned something from Kargo about swimming I've always wondered about. (Thanks Karen). As for leaking, to be on the safe side at night I take a small handtowel & fold it & put it in front of the navel, so if it were to leak it goes there first. Seems less leaking over time. I had mine since April 08. I'm very happy I was able to go this way but like Karen said whatever you end up with is better then what we had with the cancer.

Phallon

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• By Tamlin
• Posted October 22, 2009 at 2:25 pm
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My RC/Indiana Pouch surgery was May 7 2009, 5 ½ months ago, I am now 54 years old.

Can I swim? Yes, I have not gone swimming yet but I do take nice long relaxing baths. I do not cover my stoma but if I were in a public pool I would want to wear a waterproof pad over it.

Since you void with a cath, do you do the same cleaning and stuff as those with neo-bladders? Not sure what those with neobladders use. I wash my hands good with liquid dial soap, dry them with a new Viva paper towel (they are the softest), wipe off the stoma with the damp paper towel, lube the catheter, insert the catheter and drain the pouch, wash the catheter with the liquid soap good, hang it to dry and then wash my hands well again.

How often do you void? 4 hours, longer-shorter? It depends on how much fluid I have drank. Anywhere from 2 to 4 hours during the day and 6 hours at night.

Risk of infection? Have you had one? So far I have not had an infection.

How satisfied are you with it? Love it, love it, love it!!! I was in so much pain and had so much burning, up to 40 voids a day, almost housebound, how could I not love it. I am able to do have a life again.

How do you sleep? Normally? Get up at night? why? Can you sleep on your side? I sleep on my side, at first my left side hurt when I layed on it from the surgery but now I am fine. I get up once at night, 6 hours after my last cath unless the pouch gets full and wakes me up before. Go back to bed and cath again when I get up. For the first three months I had to set my alarm to get up twice during the night. I am hoping after a year to not have to get up but time will tell.

When you sleep @ night, does it leak? Does it ever leak? I have not had any leakage at night. I have had a couple of times when I leaked during the day when I bent over when it was full. I wear half of a pantyliner in my underware over the stoma to catch any small leaks.

How much does your system hold? My doctor told me to keep at about 500cc’s for the first year. I usually start to feel it getting full at around 350cc’s. It has gone up to 700cc’s. It depends on the size of pouch they are able to make you. We are different.

What daily maintaince do you need to do if any? I irrigate morning and evening with 60cc’s of saline, sometimes more often if there is a lot of mucous. My doctor will not let me dispose of the catheters after one use so I have to wash them and reuse. I also wash the syringe I use to irrigate.

What am I missing? Can’t think of anything else right now. Keep posting questions as they come up.

After the operation, did you use the system right away or was there some other way of voiding until it was healed? It was a month before all the tubes were out and I started to “use the system”.

Does the pouch allow you to be more or less normal? I am more normal than I was before the surgery. You have to be sure to have your supplies with you at all times. I make up little baggies with a catheter, lube and paper towel in them. I also have wet wipes, disposable gloves, hand sanitizer and soap in a cosmetic bag in my purse in case I should ever need them, have not needed them yet most restrooms have what you need to clean your hands but in case they are used up I want to be prepared. You can just slip a baggie with supplies in it right into your pocket before you go to the restroom. I always take three baggies of supplies with me wherever I go, keep extra in the car, one at my Mother’s, one at my sister’s.

Hope this helps. Keep us posted and ask all the questions you need to.

Tamlin

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• By neoman
• Posted October 22, 2009 at 6:44 pm
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Tamlin,

Wow, that is sooooo cool all that you wrote!! I called my wife to check it out.. we are meeting with my Uro Monday pm..

If some of you read my other discussion and comments, I am struggling with being contenant and now have a hole in my uretha to boot.

Since I have had chemo 1st, before surgery, I do have an issue healing.. However, I am cancer free!!

Thank you for all of your comments!! I will let you all know what I decide..

Neo Man

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• By neoman
• Posted October 22, 2009 at 6:46 pm
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Karego,

Ditto as to what I wrote to Tamlin!! Others also, I will follow up with some of your referrals!!

In His Name

NEOMAN

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• By Tamlin
• Posted October 22, 2009 at 7:13 pm
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Neoman,

I read your Caringbridge, very nice to share updates with others. You are very fortunate to have a loving family and many friends who got you through the chemo and neobladder surgery. If you made it through all that having your conversion should be easy. My daughter started a CarePage for me: https://www.carepages.com/carepages/tammylinden.

A reply I would like to add to "what's missing?" is a surgeon at a major center who has converted a neobladder to an Indiana Pouch. Do not let a surgeon without much experience try to do the job. MD Anderson would be my first choice if I lived in Texas.

Let us know how things go. Praying for you and your family.

Tamlin

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• By ljin
• Posted October 23, 2009 at 10:04 am
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My husband got his Indiana pouch on 9-3-09. His surgery was done at Indiana University Medical Center in Indianapolis by Dr Richard Bihrle. So far, no problems and very happy.
Swim - Doc said it was ok and didn't need to cover it, but he will
Cleaning - He cleans his catheter after each time with antibacterial soap and stores in a container of aclchol.
We are waiting on an order of one time use catheters which our insurance will pay for and doc said was ok. doc wants him to use 16fr red rubber catheters.
Voiding - He started out voiding every 2 hrs in the day and 3 hours at night and it increased each week. Now up to about 4 hrs. It depends on how much fluid intake. He does get a sense of fullness when it is time
Leakage - He has not had any leakage problems at all
Maintenance - He irriagtes twice a day with 60 CC of saline water. He has not had much mucus.
He did not use his pouch until 2 weeks after surgery.
He had to go back to doctor for an Xray to make sure everything was operating right. It was all ok , all tubes were removed and we were instructed on how to use the catheters and irriagation. This week we had to have an IVP to make sure kidneys were working and everything was great.
We are very very happy with pouch. He was in so much pain prior to surgery this is a breeze so far.

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• By jrb2162
• Posted October 23, 2009 at 1:18 pm
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I have had the indiana pouch since 1988 and I concur with everything every body else has said. It's better than living with cancer and I can do anything a normal person can do. It has served me well for over 21 years. Good Luck.

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• By neoman
• Posted October 23, 2009 at 1:38 pm
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Got some short term users, longterm (21 years!!) .Thanks guys.. I have a great surgeon, I anticipate not problems if I go there.

I was warned that chemo 1st before surgery would make surgical things harder, and that has proven true. However, being cancer free is a blessing. I will take all the lumps thrown to me.

Thanks for all of your input!!

Anyother comments??

Neo

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• By gauge
• Posted October 25, 2009 at 11:48 am
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Hi Neo,
Got your friend request. Would be glad to add my two cents. I love the fact you have so many questions. Ask the doctors, nurses, physical therapists, receptionists, janitors, etc. as many as you can think of. I am somewhat joking here but not really. The good ones will take their time and answer the others you don't want to waste your time with.

Can I swim?

Yeah I went snorkeling and scuba diving this summer, no problem

Since you void with a cath, do you do the same cleaning and stuff as those with neo-bladders?

Don't know how to compare I have only had the IP. I used to irrigate twice a day but hae not had mucous problems so haen't been flushing for 6 months now. Will check with doc next week about that being ok or not.

How often do you void? 4 hours, longer-shorter?

I cath every 2 1/2 to 3 hours while I am awake during the day. More stuff later about the night time routine

Risk of infection? Have you had one?

I have had two MAJOR ones (and a couple minor ones) that they threw me in the hospital with. They were systemic and got into my kidneys. ONCED I STOPPED REUSING MY (THOROUGHLY WASHED AND DRIED) CATHETERS I HVE NOT HAD ONE. I ONLY USE A CATHETER ONCE NOW AND PITCH IT. THEY ARE ONLY INTENDED TO BE SINGLE USE AND THERE IS A REASON FOR THAT ....PERIOD.

How satisfied are you with it?

I love the IP for the first 200-300 cc's. I hate the valve as I am just am not continent beyond 200-300 ccs. I have had one revision surgery to fix a valve problem but the doc thought she could do a less invasive fix so ended up not getting the valve replaced which was the original plan until she got in there. Well the less invasive "fix" did not work so I am back to square one needing a valve replacement. Just trying to get psyched up for yet another surgery. They use the same zipper line by the way! :-) but it still sucks :-)

How do you sleep? Normally? Get up at night? why? Can you sleep on your side?

I sleep great (on sides and back) but this is how I do it..... because I am not continent past a couple hours, I wear a pediatric size external pouch to catch my leaks during the day. This way when I start to leak the pouch catches it and then I just go drain (cath). This way I don't worry about getting wet when I am at work. Well at night, I can get a full night sleep by just using a larger urostomy external pouch so I don't have to get up during the night. I really enjoy sleeping through! I change my wafer, the part that sticks onto your skin around the stoma, every day so always feel fresh. The pouches, both pediatric and the larger night one, just stick on with an adhesive (Esteem synergy from Convatec....GREAT) so they lie very flat and don't show under clothing at all. (I found I like them better than the ones with the snap on ring type attachment)

When you sleep @ night, does it leak? Does it ever leak?

I leak every 2-3 hours. Docs think it is a failure of the ileocecal valve. They take a section of the intestine that is inbetween your large and small intestine that encompases this "naturally occuring" one way valve. One doc told me she wasn't sure why God put it there as it doesn't always work in preventing stuff from one intestine backing up into the other one anyway... :-) Maybe he put it there in case his children had to have IPs! :-) Anyway mine isn't working an that is the source of my incontinence they THINK.

How much does your system hold?

It held 500cc initially after my original surgery and after my revision but this lasted only as long as I had the swelling.... ugh. As things settled into a norm, it holds between 200-300 before I start to leak.

What daily maintaince do you need to do if any?

No flushing/irrigating for the last six months but I may go back to once a day if that will prevent stones from forming.

What am I missing?

DON'T LET ANYONE TOUCH YOU THAT HAS NOT DONE A TON OF THE EXACT TYPE OF SURGERY THAT YOU ARE CONSIDERING. SURGEONS LOVE TO DO SURGERY BUT NOT ALL ARE EXPERIENCED ENOUGH WHEN THEY DO IT!!!

After the operation, did you use the system right away or was there some other way of voiding until it was healed?

They don't want you using your pouch for a couple weeks or so after original RC...alternate drainage tube is used until it heals a bit

Does the pouch allow you to be more or less normal?

I feel mostly normal other than having to go drain more often than I would like. I do wake up every day with an external pouch that is holding around 300-400 besides what is in my IP but I just get up and go drain, shower, and get on with my day being CANCER FREE! PTL!!!

I would like these people experienced to let me know how they feel!!

I feel thankful to be alive and rest daily in the knowledge my Lord and Savior is walking with me every day as we battle this beast together.

Hope this helps. Let me know if you need more info and would love to hear what doc you settle on to do your conversion of your diversion! God Bless.

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• By neoman
• Posted October 25, 2009 at 2:59 pm
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Guage, that is big time experiance. Thank you. So far I just have had issue after issue.. I am going to see how many of these he has done.. This was advice also handed down previously.

My big issue has been my spheter not responding at all after surgey. Then I had an implant put in.. That did not work.. and I had a fistula develop.

I am not happy about shopping surgeons and other opinions, but I may just do that. I need advice from other professionals. I want this to be the last operation..

The two hour window is the norm I can tell by the amount of time your neo-bladder fills without stretching. I have a two hour window, as well of several I know and am friends with. When the bladder hits that wall, it finds the easy way out.

Thanks again for you input

God Bless to you and your family

Neo

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• By gauge
• Posted October 25, 2009 at 3:54 pm
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I think the norm for successful Indiana pouches is 4 hours between emptying. I read the average that IPs hold is 490 cc's. Since I measure 99% of my voids I know that would hold me for the 4 hours if I could hold the average amount before leaking. I think we have to shop surgeons when we get to this point. Eila Skinner from USC came highly recommended for complex surgeries of the urinary tract. I WOULD LOVE TO HEAR FROM OTHERS WHO HAVE HAD REVISION SUGERIES DONE! I have heard Indibir Gill is world class (previously at Cleveland clinic now at USC) is world class in laparoscopic surgery but unfortunately I have too much scar tissue and he even does his revisions via the open approach. Let me know where you end up going and what your plan is. Take care and God bless. Cindy

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• By neoman
• Posted October 26, 2009 at 8:36 pm
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Well, the IP may not work since they used most of the small intestine in the neo construction.

However I am going to get a second opinion at either Baylor or MD Anderson if I can get in. He gave me a few names and we are checking them now.
There are some options that I need to consider. My Uro said that other surgeons have particular skills and experiances in my situation

I have to check insurance and so on. That will be a factor.

Thanks for all the info.. Still may have to go there but not in a normal way.

neo

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• By Crazyhorse2
• Posted November 11, 2009 at 4:03 pm
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Neoman I have the IP and everything that has been said here about the same for me, but my pouch can hold up to 450 cc's and I can Cath about every 5-6 hrs on the most part unless I drink some beers. I also don't have to pay for my catheters since my wife is a nurse and after I got 2 UTI's she got a letter of medical necessity and had the Dr sign it. we then sent it into out insurance company and they payed for %80 of the cost. so she took it one step further and that was with my catheter supplier and I used them from the get go do they agreed to pick up the other %20 so I don't pay anything for them. One other thing i do is I irrigate everytime I Cath at least 30-60 cc's to cut down on the mucous and you be surprise you may have a plug think you drained all the way and then irrigate and boom more comes out. This is just me it keeps my pouch sanitary and i just got in the habit of doing it. GL, CrazYhorse

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• By Crazyhorse2
• Posted November 11, 2009 at 4:08 pm
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Oh I left something out my surgeon does at least over a 100 diversions a year and another thing you need to check is not all surgeons do the Indiana Pouch and I have read some horrid stories here from folks that got an Indiana Pouch from an inexperienced surgeon. My surgeon is Dr. Malkowicz up at the Univ of Penn in Phila google his name and his protocols speak for themselves. CrazYhorse

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